CT After Chemo

Fayard
Fayard Member Posts: 438
edited July 2011 in Uterine Cancer #1
I am about to finish chemo in about two weeks. I only had a hysterectomy and 6 cycles of carbon/taxol. The cancer was confined to the uterus, but very closed to the cervix wall. So they removed everything, including the cervix and did a vaginal cuff after surgery. I had an appointment with my onco last week. He told me I will not need a CT but in one year, because my cancer was low graded: IIB, II and was all removed with the surgery. Chemo was given to prevent recurrence. I have been reading the postings about recurrence, and I am scared.

I am having only an chest X-Ray, since back in March I had one and it showed a nodule, 4mm, in my left lung. I have also read that most lung nodules are not cancer.

What do you all think?

PS: My cancer was G3
«1

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    check NCCN guidelines
    Fayard.

    I got CT or PET scans when I was done. I'd recommend checking the National Comprehensive Cancer Network guidelines (just google and you'll get link). Look at uterine neoplasms and find your type and stage and see what is recommended for treatment and surveillence. This would give you an idea of what the standard is. And then go from there.

    Definitely monitor your own self and bring any changes to your doctors attention. My doc told me that I would be the best indicator of recurrence.

    Wishing you the best. Mary Ann
  • JoAnnDK
    JoAnnDK Member Posts: 275
    daisy366 said:

    check NCCN guidelines
    Fayard.

    I got CT or PET scans when I was done. I'd recommend checking the National Comprehensive Cancer Network guidelines (just google and you'll get link). Look at uterine neoplasms and find your type and stage and see what is recommended for treatment and surveillence. This would give you an idea of what the standard is. And then go from there.

    Definitely monitor your own self and bring any changes to your doctors attention. My doc told me that I would be the best indicator of recurrence.

    Wishing you the best. Mary Ann

    And isn't it frightening,
    And isn't it frightening, Mary Ann, to think that one is responsible for detecting her own recurrence? I have read and bee told the same thing. Such a worry.

    Here is a recent paper presented at the Society of Gynecologic Oncologists' meeting. For endometrial cancer, the authors believe that neither CA 125 nor a CT scan is a reliable predictor of recurrence ("Insufficient data for routine use"). The paper was then published in the American Journal of Obstetrics and Gynecology.

    As a caveat, I neither endorse nor promote these findings.
    =========================================

    Gyn Cancer Follow-Up Guidance
    By Charles Bankhead, Staff Writer, MedPage Today
    Published: June 01, 2011
    Reviewed by Zalman S. Agus, MD; Emeritus Professor
    University of Pennsylvania School of Medicine and
    Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner



    Good routine care and patient education provide the most useful information for detecting recurrence of gynecologic cancers, according to new recommendations for post-treatment surveillance.

    But there is little evidence to support routine use of laboratory tests and imaging studies to detect recurrences at a stage that will influence outcomes, authors of the Society of Gynecologic Oncology (SGO) clinical document concluded.

    Coordination of care among clinicians involved in post-treatment surveillance plays a key role in maintaining the continuum of follow-up for survivors of gynecologic cancers, as described in an article published online in the American Journal of Obstetrics & Gynecology.

    "The goal of follow-up evaluation for detection of recurrent disease requires both clinical and cost-effectiveness," Ritu Salani, MD, of Ohio State University in Columbus, and co-authors wrote in conclusion. "Failure to adhere to recommended guidelines results in unnecessary tests, and efforts should be made to provide effective surveillance, which will result in cost-savings.

    Action Points
    --------------------------------------------------------------------------- -----

    ■Point out that this report indicates that there is very little evidence that either routine cytologic procedures or imaging are sufficiently useful to detect ovarian and endometrial cancer recurrence and alter response rates to salvage therapy.

    ■Note that this report suggests that the most effective method to detect recurrences is a taking a thorough history, performing a detailed physical examination, and educating patients about relevant symptoms.

    "Currently, the ideal tests and schedule for gynecologic cancer surveillance have not yet been established. However, a detailed review of symptoms and physical examination at each visit results in the detection of most recurrences."

    Gynecologic cancers account for 10% of all new cancers in women but 20% of all female cancer survivors, currently estimated at 10 million.

    With anticipated advances in diagnosis and treatment, the number of gynecologic cancer survivors will continue to increase, raising the prominence of post-treatment surveillance, the researchers noted.

    A lack of data from prospective studies to support current surveillance strategies provided the impetus for the SGO Clinical Practice Committee to review the available evidence and formulate recommendations that offer gynecologic cancer survivors the best chance for long-term survival with minimal risk and acceptable cost.

    The recommendations address six gynecologic cancers: endometrial, ovarian, non-epithelial ovarian, cervical, vulvar, and vaginal. The recommendations evolved from a review of the most recent data available for post-treatment surveillance of each of the cancers.

    The committee made five recommendations regarding surveillance of endometrial cancer:

    •Physical exam and review of symptoms: Every three months to yearly, depending on cancer stage, grade, and histology, as well as interval since the end of treatment
    •Pap test/cytology: Not indicated
    •CA-125 testing: Insufficient data for routine use
    •Radiographic imaging: Insufficient data for routine use
    •Suspected recurrence: CT and/or PET scan, consider CA-125 test

    For ovarian cancer, the committee recommended:

    •Physical exam and review of symptoms: Every three months for two years, followed by increasing intervals
    •Pap test: Not indicated
    •CA-125: Optional
    •Radiographic imaging: Insufficient data to support routine use
    •Suspected recurrence: CT and/or PET, plus CA-125

    The recommendations differ for non-epithelial ovarian cancer:

    •Physical exam and review of symptoms: Every two to four months for two years, then every six months or annually depending on histology
    •Serum tumor markers: Every two to four months for two years, then every six months for sex-cord stromal tumors but no longer indicated for germ-cell tumors
    •Radiographic imaging: Generally, not indicated or data lacking to support routine use
    •Suspected recurrence: CT and tumor markers

    The recommendations for cervical, vulvar, and vaginal cancer are the same:

    •Symptom review and physical exam: Every three months to yearly, depending on stage, type of therapy, and time from the end of treatment
    •Pap test: Yearly
    •Routine radiographic imaging: Insufficient supporting data
    •Suspected recurrence: CT and/or PET

    Noting a trend toward transitioning more patients from oncologists to primary care physicians, the committee pointed to evidence that many primary care physicians do not feel comfortable with post-treatment surveillance, particularly during the first two years after treatment.

    Moreover, a survey of primary care providers showed that respondents believed transition of oncology patients could be improved with individualized patient summaries, guidelines for surveillance, and expedited referral for suspected recurrence, the committee members noted.

    "Thus, the provision of up-to-date information and the education of both patients and physicians are mandatory," they wrote.

    The authors had no relevant disclosures.
    ===================================================
    Primary source: American Journal of Obstetrics and Gynecology
    Source reference:
    Salani R, et al "Posttreatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations" Am J Obstet Gynecol 2011; DOI:10.1016/j.ajog.2011.03.008.
  • california_artist
    california_artist Member Posts: 816 Member
    Wow!!!!!!
    All I can say is, get the clothes line ladies, we've all just been hung out to dry.

    Wonder if this is also the case for prostate cancer.

    Thanks JoAnn, that was exceedingly interesting.

    It relates to the new guidelines for a drug being beneficial. I believe they changed the standard from when cancer recurs to how long one lives regardless of time of recurrence.they have changed to focusing on the end result and the interim. This was in the news recently in regards to breast cancer and Avastin. Anyone have the news clipping???

    Don't anyone panic.We will just have to work harder to find ways to stay alive. Remember the first things that doctors were supposed to do--It was-- first, do no harm. Maybe together we can find a way to have that be the norm, first do no harm.

    What's really good about this kind of dialog is we are aware of where we stand in the medical community and can choose to voice our feelings of the new practices, or not.

    Actually, though, why treat it til it hurts has sorta been my philosophy. I had read reports that said that regardless of if one is treated or not after recurrence, the end date, if I may put it so bluntly is relatively the same give or take a few months.I don't think I agree with that. not sure at this point. I have seen some very promising remissions among the currently 4B women.

    Although i did just read earlier today that a drug that costs $93,000 and only extends life for men with prostate cancer for an additional four months has been approved for Medicare and possibly insurance coverage. The reasoning was that the cost of the treatment was disallowed in determining if a drug could be prescribed, only the effectiveness could be used as a determining factor. I would post it here but I can't get scanned things to paste.

    Talk about things to think about. Yikes.

    This makes me want to read more, read faster and start questioning the powers that be. We have really got to advocate for ourselves or the farm will soon be given away.

    For those of you who are interested, can you suggest a way to get current information out to a more extended audience?? I am open to any suggestion, well, most any at least.
  • california_artist
    california_artist Member Posts: 816 Member

    Wow!!!!!!
    All I can say is, get the clothes line ladies, we've all just been hung out to dry.

    Wonder if this is also the case for prostate cancer.

    Thanks JoAnn, that was exceedingly interesting.

    It relates to the new guidelines for a drug being beneficial. I believe they changed the standard from when cancer recurs to how long one lives regardless of time of recurrence.they have changed to focusing on the end result and the interim. This was in the news recently in regards to breast cancer and Avastin. Anyone have the news clipping???

    Don't anyone panic.We will just have to work harder to find ways to stay alive. Remember the first things that doctors were supposed to do--It was-- first, do no harm. Maybe together we can find a way to have that be the norm, first do no harm.

    What's really good about this kind of dialog is we are aware of where we stand in the medical community and can choose to voice our feelings of the new practices, or not.

    Actually, though, why treat it til it hurts has sorta been my philosophy. I had read reports that said that regardless of if one is treated or not after recurrence, the end date, if I may put it so bluntly is relatively the same give or take a few months.I don't think I agree with that. not sure at this point. I have seen some very promising remissions among the currently 4B women.

    Although i did just read earlier today that a drug that costs $93,000 and only extends life for men with prostate cancer for an additional four months has been approved for Medicare and possibly insurance coverage. The reasoning was that the cost of the treatment was disallowed in determining if a drug could be prescribed, only the effectiveness could be used as a determining factor. I would post it here but I can't get scanned things to paste.

    Talk about things to think about. Yikes.

    This makes me want to read more, read faster and start questioning the powers that be. We have really got to advocate for ourselves or the farm will soon be given away.

    For those of you who are interested, can you suggest a way to get current information out to a more extended audience?? I am open to any suggestion, well, most any at least.

    I found the info on the drug and then I could find it online
    This is interesting to us specifically because it is not chemo but a new easier to take option, I think.

    This is key:

    Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process===

    The really!! important point is that they DO NOT HAVE TO HAVE GONE THROUGH CHEMO BEFORE THEY ARE ALLOWED TO USE THIS TREATMENT. So why is that important. Because chemo does things to the body that can leave it less able to recover and use new treatments. It used to be that nothing could be used til chemo had proven ineffective two or three times. This stuff is soooooooooo interesting. and all of us are on the cutting edge. What if you could just skip chemo and get this fabulous made especially for you treatment????OMG!! how thrilling. See, there is hope.

    This new standard of "reasonable and necessary" while only having a benefit of an additional four months could apply to those of you who have numerous mets. And you all know with all the other things you are doing to prolong your lives, you'll live way longer than that. WAY, WAY LONGER

    Medicare confirms payment for prostate cancer drug
    By MATTHEW PERRONE AP Health Writer
    Posted: 07/06/2011 03:27:40 PM PDT
    Updated: 07/06/2011 03:44:48 PM PDT


    WASHINGTON—Medicare officials confirmed Thursday that the program will cover the $93,000 price tag for prostate cancer drug Provenge, an innovative therapy that typically gives men suffering from an incurable stage of the disease an extra four months to live.
    The decision from the Centers for Medicare and Medicaid essentially reiterates an earlier proposed ruling that the biotech drug, made by Dendreon Corp., is a "reasonable and necessary" medicine. As expected, the government will cover the cost for men who meet the drug's approved criteria: those with prostate disease that has spread throughout the body and has not responded to hormone therapy or radiation. The government will not pay for alternate, or so called "off-label," use.

    "We do not believe there is any persuasive evidence for the off-label use," of Provenge, the agency concluded in the ruling, posted online late Thursday.

    About 240,000 new cases of prostate cancer are diagnosed each year in the U.S. and the disease claims over 33,000 lives annually, according to the American Cancer Society. The decision ensures that tens of thousands of men will be able to take the drug through the government-backed health care plan that covers seniors. With government reimbursement, analysts estimate Provenge could rack up $1 billion in sales next year. The decision is important for Dendreon because most prostate cancer patients are 65 or older.

    The infused drug is a first-of-a-kind treatment in


    --------------------------------------------------------------------------------

    Advertisement

    --------------------------------------------------------------------------------
    that each dose is customized to work with each individual patient's immune system. The drug is given in three infusions over the course of one month.
    Medicare is legally prohibited from considering price when deciding whether to pay for a new treatment. But Provenge's steep price tag had generated debate about the cost of new drugs and the government's role in paying for them, especially against the political backdrop of health care reform and the rising cost of Medicare given the large number of baby boomers.

    Seattle-based Dendreon says Provenge's price reflects the more than $1 billion spent researching and developing the drug. And prostate cancer patients point out that the median survival time with Provenge is double that of chemotherapy, which is about two months and is marked by painful side effects.

    Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process. Doctors collect special blood cells from each patient that help the immune system recognize cancer as a threat. The cells are mixed with a protein found on most prostate cancer cells and another substance to rev up the immune system, and then given back to the patient as three infusions two weeks apart.

    Provenge is the first federally-approved cancer drug that uses the body's own immune system to fight the disease, offering an alternative to chemotherapy drugs that attack cancerous and healthy cells at the same time.

    On Wednesday, Dendreon announced it received federal regulatory approval to open a second manufacturing facility in Los Angeles, in addition to its primary facility in New Jersey. The company hopes to open a third facility in Atlanta by the end of August.

    Shares of Dendreon rose 96 cents, or 2.4 percent, to $40.40 in afterhours trading. The stock had closed the regular session down $1.06, or 2.6 percent, at $39.44.
    ========

    iT'S me again. Okay, for right now it is not approved for women but prostate cancer and uterine/ovarian cancers are reproductive cancers so what we need is a good lawyer to prove discrimination.. I'm just thinking here.There is a federal law that prohibits discrimination based on a disability and I think it is a good guess that stage 4 cancer is one of the greatest disabilities there is.

    When I went to college, it was a flat out toss up between become a nutritionist and an attorney. Unfortuneatly I wasn't able to do either.
  • Fayard
    Fayard Member Posts: 438

    I found the info on the drug and then I could find it online
    This is interesting to us specifically because it is not chemo but a new easier to take option, I think.

    This is key:

    Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process===

    The really!! important point is that they DO NOT HAVE TO HAVE GONE THROUGH CHEMO BEFORE THEY ARE ALLOWED TO USE THIS TREATMENT. So why is that important. Because chemo does things to the body that can leave it less able to recover and use new treatments. It used to be that nothing could be used til chemo had proven ineffective two or three times. This stuff is soooooooooo interesting. and all of us are on the cutting edge. What if you could just skip chemo and get this fabulous made especially for you treatment????OMG!! how thrilling. See, there is hope.

    This new standard of "reasonable and necessary" while only having a benefit of an additional four months could apply to those of you who have numerous mets. And you all know with all the other things you are doing to prolong your lives, you'll live way longer than that. WAY, WAY LONGER

    Medicare confirms payment for prostate cancer drug
    By MATTHEW PERRONE AP Health Writer
    Posted: 07/06/2011 03:27:40 PM PDT
    Updated: 07/06/2011 03:44:48 PM PDT


    WASHINGTON—Medicare officials confirmed Thursday that the program will cover the $93,000 price tag for prostate cancer drug Provenge, an innovative therapy that typically gives men suffering from an incurable stage of the disease an extra four months to live.
    The decision from the Centers for Medicare and Medicaid essentially reiterates an earlier proposed ruling that the biotech drug, made by Dendreon Corp., is a "reasonable and necessary" medicine. As expected, the government will cover the cost for men who meet the drug's approved criteria: those with prostate disease that has spread throughout the body and has not responded to hormone therapy or radiation. The government will not pay for alternate, or so called "off-label," use.

    "We do not believe there is any persuasive evidence for the off-label use," of Provenge, the agency concluded in the ruling, posted online late Thursday.

    About 240,000 new cases of prostate cancer are diagnosed each year in the U.S. and the disease claims over 33,000 lives annually, according to the American Cancer Society. The decision ensures that tens of thousands of men will be able to take the drug through the government-backed health care plan that covers seniors. With government reimbursement, analysts estimate Provenge could rack up $1 billion in sales next year. The decision is important for Dendreon because most prostate cancer patients are 65 or older.

    The infused drug is a first-of-a-kind treatment in


    --------------------------------------------------------------------------------

    Advertisement

    --------------------------------------------------------------------------------
    that each dose is customized to work with each individual patient's immune system. The drug is given in three infusions over the course of one month.
    Medicare is legally prohibited from considering price when deciding whether to pay for a new treatment. But Provenge's steep price tag had generated debate about the cost of new drugs and the government's role in paying for them, especially against the political backdrop of health care reform and the rising cost of Medicare given the large number of baby boomers.

    Seattle-based Dendreon says Provenge's price reflects the more than $1 billion spent researching and developing the drug. And prostate cancer patients point out that the median survival time with Provenge is double that of chemotherapy, which is about two months and is marked by painful side effects.

    Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process. Doctors collect special blood cells from each patient that help the immune system recognize cancer as a threat. The cells are mixed with a protein found on most prostate cancer cells and another substance to rev up the immune system, and then given back to the patient as three infusions two weeks apart.

    Provenge is the first federally-approved cancer drug that uses the body's own immune system to fight the disease, offering an alternative to chemotherapy drugs that attack cancerous and healthy cells at the same time.

    On Wednesday, Dendreon announced it received federal regulatory approval to open a second manufacturing facility in Los Angeles, in addition to its primary facility in New Jersey. The company hopes to open a third facility in Atlanta by the end of August.

    Shares of Dendreon rose 96 cents, or 2.4 percent, to $40.40 in afterhours trading. The stock had closed the regular session down $1.06, or 2.6 percent, at $39.44.
    ========

    iT'S me again. Okay, for right now it is not approved for women but prostate cancer and uterine/ovarian cancers are reproductive cancers so what we need is a good lawyer to prove discrimination.. I'm just thinking here.There is a federal law that prohibits discrimination based on a disability and I think it is a good guess that stage 4 cancer is one of the greatest disabilities there is.

    When I went to college, it was a flat out toss up between become a nutritionist and an attorney. Unfortuneatly I wasn't able to do either.

    Has anyone have/had stage 2
    Has anyone have/had stage 2 grade endometrial and had a
    PET after chemo?
  • Rewriter
    Rewriter Member Posts: 493

    I found the info on the drug and then I could find it online
    This is interesting to us specifically because it is not chemo but a new easier to take option, I think.

    This is key:

    Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process===

    The really!! important point is that they DO NOT HAVE TO HAVE GONE THROUGH CHEMO BEFORE THEY ARE ALLOWED TO USE THIS TREATMENT. So why is that important. Because chemo does things to the body that can leave it less able to recover and use new treatments. It used to be that nothing could be used til chemo had proven ineffective two or three times. This stuff is soooooooooo interesting. and all of us are on the cutting edge. What if you could just skip chemo and get this fabulous made especially for you treatment????OMG!! how thrilling. See, there is hope.

    This new standard of "reasonable and necessary" while only having a benefit of an additional four months could apply to those of you who have numerous mets. And you all know with all the other things you are doing to prolong your lives, you'll live way longer than that. WAY, WAY LONGER

    Medicare confirms payment for prostate cancer drug
    By MATTHEW PERRONE AP Health Writer
    Posted: 07/06/2011 03:27:40 PM PDT
    Updated: 07/06/2011 03:44:48 PM PDT


    WASHINGTON—Medicare officials confirmed Thursday that the program will cover the $93,000 price tag for prostate cancer drug Provenge, an innovative therapy that typically gives men suffering from an incurable stage of the disease an extra four months to live.
    The decision from the Centers for Medicare and Medicaid essentially reiterates an earlier proposed ruling that the biotech drug, made by Dendreon Corp., is a "reasonable and necessary" medicine. As expected, the government will cover the cost for men who meet the drug's approved criteria: those with prostate disease that has spread throughout the body and has not responded to hormone therapy or radiation. The government will not pay for alternate, or so called "off-label," use.

    "We do not believe there is any persuasive evidence for the off-label use," of Provenge, the agency concluded in the ruling, posted online late Thursday.

    About 240,000 new cases of prostate cancer are diagnosed each year in the U.S. and the disease claims over 33,000 lives annually, according to the American Cancer Society. The decision ensures that tens of thousands of men will be able to take the drug through the government-backed health care plan that covers seniors. With government reimbursement, analysts estimate Provenge could rack up $1 billion in sales next year. The decision is important for Dendreon because most prostate cancer patients are 65 or older.

    The infused drug is a first-of-a-kind treatment in


    --------------------------------------------------------------------------------

    Advertisement

    --------------------------------------------------------------------------------
    that each dose is customized to work with each individual patient's immune system. The drug is given in three infusions over the course of one month.
    Medicare is legally prohibited from considering price when deciding whether to pay for a new treatment. But Provenge's steep price tag had generated debate about the cost of new drugs and the government's role in paying for them, especially against the political backdrop of health care reform and the rising cost of Medicare given the large number of baby boomers.

    Seattle-based Dendreon says Provenge's price reflects the more than $1 billion spent researching and developing the drug. And prostate cancer patients point out that the median survival time with Provenge is double that of chemotherapy, which is about two months and is marked by painful side effects.

    Each regimen of Provenge must be tailored to the immune system of the individual patient using a time-consuming formulation process. Doctors collect special blood cells from each patient that help the immune system recognize cancer as a threat. The cells are mixed with a protein found on most prostate cancer cells and another substance to rev up the immune system, and then given back to the patient as three infusions two weeks apart.

    Provenge is the first federally-approved cancer drug that uses the body's own immune system to fight the disease, offering an alternative to chemotherapy drugs that attack cancerous and healthy cells at the same time.

    On Wednesday, Dendreon announced it received federal regulatory approval to open a second manufacturing facility in Los Angeles, in addition to its primary facility in New Jersey. The company hopes to open a third facility in Atlanta by the end of August.

    Shares of Dendreon rose 96 cents, or 2.4 percent, to $40.40 in afterhours trading. The stock had closed the regular session down $1.06, or 2.6 percent, at $39.44.
    ========

    iT'S me again. Okay, for right now it is not approved for women but prostate cancer and uterine/ovarian cancers are reproductive cancers so what we need is a good lawyer to prove discrimination.. I'm just thinking here.There is a federal law that prohibits discrimination based on a disability and I think it is a good guess that stage 4 cancer is one of the greatest disabilities there is.

    When I went to college, it was a flat out toss up between become a nutritionist and an attorney. Unfortuneatly I wasn't able to do either.

    Incredibly interesting information that gives hope
    This is SO exciting; and thanks, Claudia, for pointing out that if the tailored treatment is used in combination with other things we are doing to prolong our lives, we might get WAY more than four extra months. Having this alternative to chemotherapy, with its associated side-effects, gives me such hope, despite its current limited use.

    The catch is that we seem to have to fight for this alternative. Is this sexism at work? Other than breast cancer, women's cancers get short shrift. "The government will not pay for alternate, or so-called "off-label" use"; nor does the drug manufacturer believe that there is any persuasive evidence for alternate use. Wha??

    If the drug company is resistant to studying alternate use (and why this is I fail to understand), what motivation does the government have to fund such research.

    I am working on figuring out how to speak up (other than on this board, where many of you probably wish I would shut up). Suggestions welcome.
  • Rewriter
    Rewriter Member Posts: 493
    JoAnnDK said:

    And isn't it frightening,
    And isn't it frightening, Mary Ann, to think that one is responsible for detecting her own recurrence? I have read and bee told the same thing. Such a worry.

    Here is a recent paper presented at the Society of Gynecologic Oncologists' meeting. For endometrial cancer, the authors believe that neither CA 125 nor a CT scan is a reliable predictor of recurrence ("Insufficient data for routine use"). The paper was then published in the American Journal of Obstetrics and Gynecology.

    As a caveat, I neither endorse nor promote these findings.
    =========================================

    Gyn Cancer Follow-Up Guidance
    By Charles Bankhead, Staff Writer, MedPage Today
    Published: June 01, 2011
    Reviewed by Zalman S. Agus, MD; Emeritus Professor
    University of Pennsylvania School of Medicine and
    Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner



    Good routine care and patient education provide the most useful information for detecting recurrence of gynecologic cancers, according to new recommendations for post-treatment surveillance.

    But there is little evidence to support routine use of laboratory tests and imaging studies to detect recurrences at a stage that will influence outcomes, authors of the Society of Gynecologic Oncology (SGO) clinical document concluded.

    Coordination of care among clinicians involved in post-treatment surveillance plays a key role in maintaining the continuum of follow-up for survivors of gynecologic cancers, as described in an article published online in the American Journal of Obstetrics & Gynecology.

    "The goal of follow-up evaluation for detection of recurrent disease requires both clinical and cost-effectiveness," Ritu Salani, MD, of Ohio State University in Columbus, and co-authors wrote in conclusion. "Failure to adhere to recommended guidelines results in unnecessary tests, and efforts should be made to provide effective surveillance, which will result in cost-savings.

    Action Points
    --------------------------------------------------------------------------- -----

    ■Point out that this report indicates that there is very little evidence that either routine cytologic procedures or imaging are sufficiently useful to detect ovarian and endometrial cancer recurrence and alter response rates to salvage therapy.

    ■Note that this report suggests that the most effective method to detect recurrences is a taking a thorough history, performing a detailed physical examination, and educating patients about relevant symptoms.

    "Currently, the ideal tests and schedule for gynecologic cancer surveillance have not yet been established. However, a detailed review of symptoms and physical examination at each visit results in the detection of most recurrences."

    Gynecologic cancers account for 10% of all new cancers in women but 20% of all female cancer survivors, currently estimated at 10 million.

    With anticipated advances in diagnosis and treatment, the number of gynecologic cancer survivors will continue to increase, raising the prominence of post-treatment surveillance, the researchers noted.

    A lack of data from prospective studies to support current surveillance strategies provided the impetus for the SGO Clinical Practice Committee to review the available evidence and formulate recommendations that offer gynecologic cancer survivors the best chance for long-term survival with minimal risk and acceptable cost.

    The recommendations address six gynecologic cancers: endometrial, ovarian, non-epithelial ovarian, cervical, vulvar, and vaginal. The recommendations evolved from a review of the most recent data available for post-treatment surveillance of each of the cancers.

    The committee made five recommendations regarding surveillance of endometrial cancer:

    •Physical exam and review of symptoms: Every three months to yearly, depending on cancer stage, grade, and histology, as well as interval since the end of treatment
    •Pap test/cytology: Not indicated
    •CA-125 testing: Insufficient data for routine use
    •Radiographic imaging: Insufficient data for routine use
    •Suspected recurrence: CT and/or PET scan, consider CA-125 test

    For ovarian cancer, the committee recommended:

    •Physical exam and review of symptoms: Every three months for two years, followed by increasing intervals
    •Pap test: Not indicated
    •CA-125: Optional
    •Radiographic imaging: Insufficient data to support routine use
    •Suspected recurrence: CT and/or PET, plus CA-125

    The recommendations differ for non-epithelial ovarian cancer:

    •Physical exam and review of symptoms: Every two to four months for two years, then every six months or annually depending on histology
    •Serum tumor markers: Every two to four months for two years, then every six months for sex-cord stromal tumors but no longer indicated for germ-cell tumors
    •Radiographic imaging: Generally, not indicated or data lacking to support routine use
    •Suspected recurrence: CT and tumor markers

    The recommendations for cervical, vulvar, and vaginal cancer are the same:

    •Symptom review and physical exam: Every three months to yearly, depending on stage, type of therapy, and time from the end of treatment
    •Pap test: Yearly
    •Routine radiographic imaging: Insufficient supporting data
    •Suspected recurrence: CT and/or PET

    Noting a trend toward transitioning more patients from oncologists to primary care physicians, the committee pointed to evidence that many primary care physicians do not feel comfortable with post-treatment surveillance, particularly during the first two years after treatment.

    Moreover, a survey of primary care providers showed that respondents believed transition of oncology patients could be improved with individualized patient summaries, guidelines for surveillance, and expedited referral for suspected recurrence, the committee members noted.

    "Thus, the provision of up-to-date information and the education of both patients and physicians are mandatory," they wrote.

    The authors had no relevant disclosures.
    ===================================================
    Primary source: American Journal of Obstetrics and Gynecology
    Source reference:
    Salani R, et al "Posttreatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations" Am J Obstet Gynecol 2011; DOI:10.1016/j.ajog.2011.03.008.

    Scary, scary, scary
    Put all of the burden for detecting recurrence either on us or on our primary care physicians, who admit to not feeling comfortable performing post-treatment surveillance. In addition, take away insurance coverage for laboratory tests and imaging studies used to detect recurrences because there's very little evidence to indicate that they are sufficiently effective in detecting recurrence. (Pay special attention to the word "sufficiently," which is a completely arbitrary determination) This despite not currently having an alternative.

    Can you count the number of times that "cost-savings" or another cost-related variation was used?

    So in the future, I need to worry that my surveillance will be completely up to me, in partnership with my primary care physician and with insurance denying such tests as CA-125 and PET scans.

    Am I missing something, or am I just now realizing the way the world works?
  • Rewriter
    Rewriter Member Posts: 493
    Rewriter said:

    Scary, scary, scary
    Put all of the burden for detecting recurrence either on us or on our primary care physicians, who admit to not feeling comfortable performing post-treatment surveillance. In addition, take away insurance coverage for laboratory tests and imaging studies used to detect recurrences because there's very little evidence to indicate that they are sufficiently effective in detecting recurrence. (Pay special attention to the word "sufficiently," which is a completely arbitrary determination) This despite not currently having an alternative.

    Can you count the number of times that "cost-savings" or another cost-related variation was used?

    So in the future, I need to worry that my surveillance will be completely up to me, in partnership with my primary care physician and with insurance denying such tests as CA-125 and PET scans.

    Am I missing something, or am I just now realizing the way the world works?

    This bears repeating
    a drug that costs $93,000 and only extends life for men with prostate cancer for an additional four months has been approved for Medicare and possibly insurance coverage

    Also, my above post relates to treatment for gynecological cancers only (women's cancers).
  • california_artist
    california_artist Member Posts: 816 Member
    Rewriter said:

    Scary, scary, scary
    Put all of the burden for detecting recurrence either on us or on our primary care physicians, who admit to not feeling comfortable performing post-treatment surveillance. In addition, take away insurance coverage for laboratory tests and imaging studies used to detect recurrences because there's very little evidence to indicate that they are sufficiently effective in detecting recurrence. (Pay special attention to the word "sufficiently," which is a completely arbitrary determination) This despite not currently having an alternative.

    Can you count the number of times that "cost-savings" or another cost-related variation was used?

    So in the future, I need to worry that my surveillance will be completely up to me, in partnership with my primary care physician and with insurance denying such tests as CA-125 and PET scans.

    Am I missing something, or am I just now realizing the way the world works?

    Sorry to say, Jill, the light has just gone on for you
    and what it illuminates is not a pretty picture for any of us.

    These things they are passing, the new guidelines are more than guidelines, they become standard practices against which all treatment costs and approvals of insurance companies are based.

    It is really bad. But, what with insurance companies no longer being able to just cancel policies of the sickest and neediest among us, they are changing the rules in order to protect their profits. Think of the millions or even billions they will save if they don't have to treat anyone until something visibly breaks or grows horns.

    There is hope in the thought that your doctors, because they won't be able to treat you and therefor will not be getting paid, may just object to the rafters about this situation.


    I believe that almost none of the women here actually felt sick or in pain and in need of treatment, but were discovered to need treatment only after a scan. Am I remembering that right????

    And, ah, Jill, the world may just have gotten suckier for you, but remember, there are people here who care for you. Now that sounded really schmaltzy. you know what I mean.
  • california_artist
    california_artist Member Posts: 816 Member
    Fayard, I am so sorry we all sorta got sidetracked. Well, I did.
    Grade 3 generally is a designation of pap serous or clear cell, I think. Either of these are more agressive cancers and in the past have warranted a PET/CT or at the very least a CT to check on progression or recession of you cancer. I do apologize again for not responding sooner.

    The NCCN guidelines are on line and will help you out. Registration is quick and the information is vast. There are little charts re treatment standards.

    Hang in there
  • culka
    culka Member Posts: 149 Member
    Fayard said:

    Has anyone have/had stage 2
    Has anyone have/had stage 2 grade endometrial and had a
    PET after chemo?

    I have
    stage IIb, grade 3, no chemo, but radiation. No Pet scan. Year after radiation discharge from follow-up. So any recurrence scare I consulted with family doctor who admit the same like Jill's. He doesn't know.

    It is on us ladies.
  • Kaleena
    Kaleena Member Posts: 2,081 Member
    Fayard said:

    Has anyone have/had stage 2
    Has anyone have/had stage 2 grade endometrial and had a
    PET after chemo?

    Hi Fayard:
    I was diagnosed

    Hi Fayard:

    I was diagnosed with Grade 2, Stage ii/iiia endometrial adencarcinoma in September of 2005. Since that time, I had a CT Scan prior to chemo. One after chemo 7 months later. Then I would get a yearly CT Scan. After three years, I was getting a CT Scan every six months because of scarring. Then in July of 2009, my new doctor thought he saw something (it was there since 2005). Ordered PET Scan (it was negative), ordered CT Scan (it was negative) then ordered MRI (it was negative) within three weeks of each other. I did have a positive biopsy which I had surgery for in February of 2010 (which was negative except for a lymph node which had microscopic cells) and since that time I have had two PET Scans (both negative). I was ordered to have a PET scan last week, but new insurance is denying it. It is in appeals.

    But I am finally getting my port out on Thursday (it was in since 2005) and I was done with treatment in May of 2006. Go figure.

    My best to you.

    Kathy
  • Fayard
    Fayard Member Posts: 438
    Kaleena said:

    Hi Fayard:
    I was diagnosed

    Hi Fayard:

    I was diagnosed with Grade 2, Stage ii/iiia endometrial adencarcinoma in September of 2005. Since that time, I had a CT Scan prior to chemo. One after chemo 7 months later. Then I would get a yearly CT Scan. After three years, I was getting a CT Scan every six months because of scarring. Then in July of 2009, my new doctor thought he saw something (it was there since 2005). Ordered PET Scan (it was negative), ordered CT Scan (it was negative) then ordered MRI (it was negative) within three weeks of each other. I did have a positive biopsy which I had surgery for in February of 2010 (which was negative except for a lymph node which had microscopic cells) and since that time I have had two PET Scans (both negative). I was ordered to have a PET scan last week, but new insurance is denying it. It is in appeals.

    But I am finally getting my port out on Thursday (it was in since 2005) and I was done with treatment in May of 2006. Go figure.

    My best to you.

    Kathy

    Cure?
    It sounds like you have been clean since 2005. Did you only have chemo? Hysterectomy?
    My cancer grade was G3, clear cell.
  • Fayard
    Fayard Member Posts: 438

    Fayard, I am so sorry we all sorta got sidetracked. Well, I did.
    Grade 3 generally is a designation of pap serous or clear cell, I think. Either of these are more agressive cancers and in the past have warranted a PET/CT or at the very least a CT to check on progression or recession of you cancer. I do apologize again for not responding sooner.

    The NCCN guidelines are on line and will help you out. Registration is quick and the information is vast. There are little charts re treatment standards.

    Hang in there

    Valuable info
    Thank you for the info. Here is what I found under the NCCN website among other things:

    Chest X-Ray annually
    CT/MRI as clinically indicated (I do not know what this means.)
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Fayard said:

    Has anyone have/had stage 2
    Has anyone have/had stage 2 grade endometrial and had a
    PET after chemo?

    Stage 2 PET
    I had only CTs. Never have had a PET. I had endometrial adenocarcinoma stage 2B
  • JoAnnDK
    JoAnnDK Member Posts: 275
    Fayard said:

    Valuable info
    Thank you for the info. Here is what I found under the NCCN website among other things:

    Chest X-Ray annually
    CT/MRI as clinically indicated (I do not know what this means.)

    let's not forget.......
    ........that not only do men have this new prostate cancer drug, but they also have Viagra. Yet there is no "cure" for morning sickness (or neuropathy for that matter). GRRRR I realize that neither of these conditions are fatal, but neither is erectile dysfunction!
  • Fayard
    Fayard Member Posts: 438

    Stage 2 PET
    I had only CTs. Never have had a PET. I had endometrial adenocarcinoma stage 2B

    When did you finish your
    When did you finish your treatment? What grade was it?
  • Kaleena
    Kaleena Member Posts: 2,081 Member
    Fayard said:

    Cure?
    It sounds like you have been clean since 2005. Did you only have chemo? Hysterectomy?
    My cancer grade was G3, clear cell.

    I had a total hysterectomy
    I had a total hysterectomy due to endometriosis (was not supposed to be cancer). After hysterectomy, the pathology came back with cancer so I had to do a staging surgery. At that surgery everything was negative so it was suggested that I have a preventable treatment of Taxol/Carbo treatment (in order to prevent any loose cells roaming around). After the six rounds of treatment (six months). I had 3 brachytherapies. My radiation/onc did not want to do pelvic radiation due to the fact that I was already so scarred from the endometriosis.

    I was good until a positive biopsy in October of 2009. I had the small tumor removed in February of 2010 which was negative and at that time they removed a few lymph nodes. Only one came back with microscopic cells. No treatment was suggested (I could of had radiation, but the lymph was removed). Since then, I had two PET scans, both negative and am now due for another one but my new insurance company denied the request.

    At the time of my diagnosis, the doctor indicated that what I had was treatable. I believe that it was no one ever took out my port. But now I have been refused by the local hospitals where I live to flush the port because my doctor is out of state. As a result, I have not had my port flushed since January so now it is useless. Tomorrow I get it out.
  • Fayard
    Fayard Member Posts: 438
    Kaleena said:

    I had a total hysterectomy
    I had a total hysterectomy due to endometriosis (was not supposed to be cancer). After hysterectomy, the pathology came back with cancer so I had to do a staging surgery. At that surgery everything was negative so it was suggested that I have a preventable treatment of Taxol/Carbo treatment (in order to prevent any loose cells roaming around). After the six rounds of treatment (six months). I had 3 brachytherapies. My radiation/onc did not want to do pelvic radiation due to the fact that I was already so scarred from the endometriosis.

    I was good until a positive biopsy in October of 2009. I had the small tumor removed in February of 2010 which was negative and at that time they removed a few lymph nodes. Only one came back with microscopic cells. No treatment was suggested (I could of had radiation, but the lymph was removed). Since then, I had two PET scans, both negative and am now due for another one but my new insurance company denied the request.

    At the time of my diagnosis, the doctor indicated that what I had was treatable. I believe that it was no one ever took out my port. But now I have been refused by the local hospitals where I live to flush the port because my doctor is out of state. As a result, I have not had my port flushed since January so now it is useless. Tomorrow I get it out.

    I am glad everything worked
    I am glad everything worked out well for you.
    My uterus was the only one infected with the cancer, which also invaded the myometrium 9mm of 14 mm. They took out 58 lymph nodes, and fortunately none was infected.
    My doctor also wanted me to have treatment to prevent recurrence by killing any possible cell that might to have escaped.
  • kkstef
    kkstef Member Posts: 688
    JoAnnDK said:

    And isn't it frightening,
    And isn't it frightening, Mary Ann, to think that one is responsible for detecting her own recurrence? I have read and bee told the same thing. Such a worry.

    Here is a recent paper presented at the Society of Gynecologic Oncologists' meeting. For endometrial cancer, the authors believe that neither CA 125 nor a CT scan is a reliable predictor of recurrence ("Insufficient data for routine use"). The paper was then published in the American Journal of Obstetrics and Gynecology.

    As a caveat, I neither endorse nor promote these findings.
    =========================================

    Gyn Cancer Follow-Up Guidance
    By Charles Bankhead, Staff Writer, MedPage Today
    Published: June 01, 2011
    Reviewed by Zalman S. Agus, MD; Emeritus Professor
    University of Pennsylvania School of Medicine and
    Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner



    Good routine care and patient education provide the most useful information for detecting recurrence of gynecologic cancers, according to new recommendations for post-treatment surveillance.

    But there is little evidence to support routine use of laboratory tests and imaging studies to detect recurrences at a stage that will influence outcomes, authors of the Society of Gynecologic Oncology (SGO) clinical document concluded.

    Coordination of care among clinicians involved in post-treatment surveillance plays a key role in maintaining the continuum of follow-up for survivors of gynecologic cancers, as described in an article published online in the American Journal of Obstetrics & Gynecology.

    "The goal of follow-up evaluation for detection of recurrent disease requires both clinical and cost-effectiveness," Ritu Salani, MD, of Ohio State University in Columbus, and co-authors wrote in conclusion. "Failure to adhere to recommended guidelines results in unnecessary tests, and efforts should be made to provide effective surveillance, which will result in cost-savings.

    Action Points
    --------------------------------------------------------------------------- -----

    ■Point out that this report indicates that there is very little evidence that either routine cytologic procedures or imaging are sufficiently useful to detect ovarian and endometrial cancer recurrence and alter response rates to salvage therapy.

    ■Note that this report suggests that the most effective method to detect recurrences is a taking a thorough history, performing a detailed physical examination, and educating patients about relevant symptoms.

    "Currently, the ideal tests and schedule for gynecologic cancer surveillance have not yet been established. However, a detailed review of symptoms and physical examination at each visit results in the detection of most recurrences."

    Gynecologic cancers account for 10% of all new cancers in women but 20% of all female cancer survivors, currently estimated at 10 million.

    With anticipated advances in diagnosis and treatment, the number of gynecologic cancer survivors will continue to increase, raising the prominence of post-treatment surveillance, the researchers noted.

    A lack of data from prospective studies to support current surveillance strategies provided the impetus for the SGO Clinical Practice Committee to review the available evidence and formulate recommendations that offer gynecologic cancer survivors the best chance for long-term survival with minimal risk and acceptable cost.

    The recommendations address six gynecologic cancers: endometrial, ovarian, non-epithelial ovarian, cervical, vulvar, and vaginal. The recommendations evolved from a review of the most recent data available for post-treatment surveillance of each of the cancers.

    The committee made five recommendations regarding surveillance of endometrial cancer:

    •Physical exam and review of symptoms: Every three months to yearly, depending on cancer stage, grade, and histology, as well as interval since the end of treatment
    •Pap test/cytology: Not indicated
    •CA-125 testing: Insufficient data for routine use
    •Radiographic imaging: Insufficient data for routine use
    •Suspected recurrence: CT and/or PET scan, consider CA-125 test

    For ovarian cancer, the committee recommended:

    •Physical exam and review of symptoms: Every three months for two years, followed by increasing intervals
    •Pap test: Not indicated
    •CA-125: Optional
    •Radiographic imaging: Insufficient data to support routine use
    •Suspected recurrence: CT and/or PET, plus CA-125

    The recommendations differ for non-epithelial ovarian cancer:

    •Physical exam and review of symptoms: Every two to four months for two years, then every six months or annually depending on histology
    •Serum tumor markers: Every two to four months for two years, then every six months for sex-cord stromal tumors but no longer indicated for germ-cell tumors
    •Radiographic imaging: Generally, not indicated or data lacking to support routine use
    •Suspected recurrence: CT and tumor markers

    The recommendations for cervical, vulvar, and vaginal cancer are the same:

    •Symptom review and physical exam: Every three months to yearly, depending on stage, type of therapy, and time from the end of treatment
    •Pap test: Yearly
    •Routine radiographic imaging: Insufficient supporting data
    •Suspected recurrence: CT and/or PET

    Noting a trend toward transitioning more patients from oncologists to primary care physicians, the committee pointed to evidence that many primary care physicians do not feel comfortable with post-treatment surveillance, particularly during the first two years after treatment.

    Moreover, a survey of primary care providers showed that respondents believed transition of oncology patients could be improved with individualized patient summaries, guidelines for surveillance, and expedited referral for suspected recurrence, the committee members noted.

    "Thus, the provision of up-to-date information and the education of both patients and physicians are mandatory," they wrote.

    The authors had no relevant disclosures.
    ===================================================
    Primary source: American Journal of Obstetrics and Gynecology
    Source reference:
    Salani R, et al "Posttreatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations" Am J Obstet Gynecol 2011; DOI:10.1016/j.ajog.2011.03.008.

    What interesting posts yesterday
    I didn't read the posts yesterday and I must say it was filled with interesting info... this article on GYN follow-up along with the study re: Avastin and Taxol (will be interesting to see what develops), the possibilities for the new drug Provenge tailor made to the individual's immune system, and the studies on turmeric.

    Such vibrant, intelligent ladies on this site! I learn something new (and some days LOTS OF NEW THINGS) every time I sign on. Always some food for thought. Makes my head swim!

    THANKS to each and everyone of you!

    Karen